Tougher Than the Rest - The Fathers of QENDO

By Team QENDO & QENDO Dads

“So, endocrinology would be what? Disorders of the gallbladder?”

I look up from my textbook, eyeing my father with an expression somewhere between amused and annoyed. I have my physiology textbooks spread out over our kitchen table, studying for yet another exam, and Dad is trying - not hard enough it would seem - to amuse himself and not distract me. He stares back, knowing that I know exactly what he’s quoting, and what I am supposed to do next. I sigh and do my best Ellie Bartlet.

“Thyroid...actually it’s more than that, Ellie Bartlet was wrong,” I reply, turning back my book.

“I'm pretty sure you're wrong about that, I think endocrinology is a sub-specialty of internal medicine, devoted to the digestive system,” he replies, his best President Bartlet impression.

“That would be gastroenterology,” I quip.

“Are you sure it's not…ah I forget the other specialties,” he laughs, the Martin Sheen accent falls away and the Aussie returns.

The scene we are playing out is from an episode of Aaron Sorkin’s The West Wing, one of the many television shows we watch together and can quote on command. While Mum will look at us as we have seamless, albeit completely spontaneous, conversations derived purely from recitations of our favourite TV shows, and shake her head, asking “what are you two on about?”, we relish in our shared loves. Whether it’s an inside joke, like the simple phrase “Xerses” that will make both of us lose our collective dignity with laughter, a moment that can only be made whole by a Josh Lyman or Toby Ziegler quote, or a Bruce Springsteen song - Dad and I always have something to make us laugh, even when we want to cry.

My Dad has a way of being exactly what I need, every time. If I want to talk about something seriously, he can be supportive, give good advice, and tell me everything will be okay. But if I don’t want to talk and I just want to forget or distract myself, all I need do is make one joke and the message is sent...then suddenly we’re making terrible, probably inappropriate, jokes about whatever it is. It just works, and no matter how long I go without talking to him via more than text, I always fit.

So when I was diagnosed with endometriosis, part of me wasn’t sure how to talk about it around Dad. There didn’t seem to be much that was funny about it, not at first, and so I couldn’t joke about it, but talking seriously about it seemed like too much. Everything hurt, and I had no idea when that wouldn’t be the case again. Still he was there, still he did his best to understand something I wasn’t sure I completely understood myself. Dad always has, and always will be, nothing short of extraordinary - and completely unaware of it.

When I asked the QENDO girls about how their fathers had influenced their endometriosis journey, I was overjoyed with the responses I got.

Jaime talked about how supportive her father has always been, her go to guy for appointments and battles with endo:

“My dad is my rock, has been to every one of my gynae appts when we were living in the same country and continues champion Endo and support me from across the water. A story I recall is after my first lap I was admitted to hospital in a town about 5 hours from home with suspected appendicitis “but they didn’t know if it was”. After 5 days of sitting round they decided with encouragement from me and my parents they’d operate because it couldn’t be the return of Endo that quickly. Dad was very clear with them noting I don’t “put things on” and I still believe that’s why they operated. That was my second laparoscopy.”

Kristen spoke of her Dad learning to take an interest and ask questions about endo, and how his support never falters:

“My dad has been there through every step of the journey so far. He and I laughed one day after talking about my latest news from my gynaecologist. He scoffed how crazy it was that here we were talking about periods and "lady business" and how my grandfather would fall off his chair at the thought. Now he is asking questions and sharing information to others about this disease (whether he gets it 100% or not). He is starting the conversation - one of the goals of endometriosis awareness. Go Dad. No matter the kind of support, my dad has been there by my side.”

Steph M told a story of a father who has supported two women he loves through endo, not wanting his daughter to relive the negative experiences of her mother:

“My dad went through a lot of this with my mum, all the doctors appointments, inconclusive results (minus an endometriosis diagnosis). By the time I came around they were both passionate about educating me to listen to my body and to seek help when I felt something was wrong. He went along to my doctors appointment when I went on the pill as my mum was at work and he made sure to ask all the necessary questions as he didn't want me to relive my mums experience. He's always been one of my main supports when it comes to endometriosis and growing up, along with my mum and partner.”

Finally, Ash spoke of her father, and the father of her son Fletcher, and how both men have been pivotal in her endo journey, helping her stay strong in the face of adversity:

“My Dad is by far my best support. He would come home from work, I would be throwing up from being in so much pain so he would take me up to the emergency room. Sit for hours upon hours, get a few hours sleep and he’d go back to work. He wanted answers just as much as I did. Every doctors appointment he would call me after and have a chat. The day I had my first surgery, he brought up a bunch of flowers for me. When my OBGYN at the time told me that I had Endometriosis, he was relieved that we now had a diagnosis. Almost 10years of knowing I have Endo, boyfriends have past, friendships have failed but I have always had Dad to rely on. Every time I have a bad day, he is always there on the other end of the phone for me. Any new information I find I send to him and he is always sharing. I believe it has also helped him to relate with other females in his life that have severe period pain. I am so thankful to have one of the best dads around. I would be lost without my rock.”

“To the father of my child: pre baby you cared for me, post baby you still continue to care for me. There are days I don’t want to move from the couch. So you take over and be Mum and Dad. As much as it annoys me I cannot be the most amazing mother to our son 100% of the time, I know that you will step up when I need to lay down. Thank you for your constant support and panadol giving. You have always understood my health conditions and I can only hope that our son is as strong and supportive of his future wife as you have been to me. Happy 2nd Fathers Day!”

Here at QENDO we’re a family, and that family is mostly women. So this Father’s Day we take a moment thank the fathers of QENDO, those who do battle by our side every day. To quote Bruce Springsteen, should you grow weary on the battlefield, do not despair, our love is real.

To honour our QENDO Dads, two of them shared what it’s like to be the father of someone with endometriosis. Thank you Dad, and Kevin White, Jaime’s Dad, for your contributions, and Happy Father’s Day!

Brad Stewart - Dannielle Stewart, Support Work Coordinator

As a man, I knew very little about endometriosis. I’d heard of it and knew it affected women. I had heard it was painful. When I think of pain, I generally think of discomfort, twinges, niggles. When my daughter Dannielle was diagnosed with endometriosis, I was naturally concerned but had no idea the daily challenges it presented to her, and the extent of the pain she was in.

I haven’t lived a healthy lifestyle in my 52 years, but I have experienced good health. I rarely get sick, I’d never been in hospital, never broken a bone… a calf cramp in my sleep was the most amount of pain I’d ever experienced. That all changed in May this year when I suffered a kidney stone attack. It struck suddenly at 5pm on a Saturday and landed me in hospital. The pain was unbearable, excruciating and unrelenting… there was no relief from it. It was the worst 5 hours of my life and I will never forget it. After follow-up scans and x-rays they found an 11mm stone and promptly booked me in for surgery within 3 weeks. It took 2 procedures under general anaesthetic to fully remove it, and while the recovery from the first procedure was uncomfortable, 6 weeks after the initial attack I was basically cured and back to full health. My procedures where prioritised and fully paid for by the public health system and at no expense to myself. When sharing this experience with Dannielle she said to me – “now you have an idea of what endometriosis sufferers endure every day”. It certainly put it into perspective for me.

Although my kidney stone caused unimaginable pain, it was over after 5 hours. My procedures were conducted with minimal delay. Endometriosis causes pain every day. Surgical treatment is considered elective, so you go on a waiting list whilst living with debilitating pain. Or you battle with your private health provider about what constitutes a “pre-existing condition”. Or you pay for it yourself, because the pain is too much to bear. I find this the hardest part to understand, given my kidney stone experience. Surgical treatment for endometriosis should be as accessible and as publicly funded as my procedure was. Especially as there is no cure.

My daughter lives with her disease every day. She channels her pain into her work with QENDO, and I find her dedication to this work inspiring. I know her experience with endometriosis has helped shape the wonderful nurse she has become, and the truly amazing nurse she will be in the future. It also makes me enormously proud of the brave woman and beautiful person she is and always will be.

Kevin White - Jaime White, Secretary

Hi I’m Kevin , father of Jaime.

Jaime lives with the condition Endometriosis.

Until Jaime was diagnosed with endo, I was totally unaware the condition existed .My role has been purely one of support, initially taking her to appointments with specialists and and being beside her to learn more about the condition and how I could best support her as she came to terms with living with endo.

With Jaime now residing in Australia, we communicate pretty much on a daily basis through skype, facebook etc. I know that keeping this contact ongoing has been invaluable to her. We make regular visits to her and endeavour to time these to coincide with her holiday breaks. She also comes home regularly.

Your support network is hugely important in assisting Jaime and no doubt many others in dealing with the issues that arise from having endo.

Through being proactive in front footing the education and awareness programmes that have been implemented, I feel many of us as support people have a greater understanding of the condition and how we can best be of assistance. Encouraging fellow sufferers to become involved in these support groups can only be a positive step to their wellbeing going forward.

It has also been encouraging to see some of the high profile personalities come forward with their own challenges with endo. Their efforts in creating awareness can only enhance the great work that you and your colleagues are doing.

The QENDO team wish all the Dads out there a Happy Fathers Day 

"A father is neither an anchor to hold us back nor a sail to take us there, but a guiding light who's love shows us the way"

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